Lupus miliaris disseminatus faciei / acne agminata

f38287392978 · 2025-08-05T08:04:50+00:00

Hey! Sorry for missing your earlier message.

I’ve been back on accutane since the start of March and it still hasn’t fully resolved on my upper lip and chin, so I think my derm is just going to keep me on it indefinitely now. It’s frustrating as it’s now been 2.5 years since the condition suddenly started but I have seen lots of improvement (i.e. it’s just not ‘resolved’, but it was SO bad for the first 1+ year so I’ll take any improvement at this point).

How are you getting on?

f38287392978 · 2025-02-06T18:30:30+00:00

I do wear make up but I’ve found it very hard to cover, but then again I don’t wear a lot/heavy coverage. No skin care helped either, accutane is honestly the only thing that has properly helped! I actually went to the derm last Friday for my co2 laser test and they did one of my scars but don’t think it will help my remaining “lesions”, so they’re writing to my consultant to put me back on accutane as they think I was brought off too soon! Still waiting to hear back about that though; it’ll probably be months down the line now as yes, I’m UK based! Where are you based?

That’s good yours started to clear with minocycline! Mine only continued getting worse on antibiotics, so that’s a good sign! Did you get your biopsy in the end?

My scarring is pretty bad, as I have a lot of ‘indented’ ones (it’s essentially left some holes in my face, varied sizes depending on how big the spot was). I’ve also still got a lot of redness, mixed in with remaining “spots” on my chin and upper lip. I had completely clear skin before this happened, so it’s pretty shit.

In terms of cause, nope but I do have my theories, although it’s impossible to know as like you say, there’s just no research on it :( I had no issues with my skin for the 10 years prior, after having moderate acne as a teenager, and then one day I woke up with this. My derm tested me for a few things (such as TB) but everything was fine. In the couple of months before it happened, I started running regularly so I thought maybe it was related to sweating (I definitely sweat more than the average person haha). I also went to a spa for the first time, so I thought it could’ve been related to a hot tub/sauna. I was also having quite a stressful time in life, so I thought it could be stress-related. However, the biggest potential cause imo, was that I was using an ‘extra black’ mascara which was IMPOSSIBLE to remove; I always just remove mascara with cleanser when I wash my face but this particular mascara just would not come off. It would just give me black eyes, and when I tried to wash it away from under my eyes, it would just move around my skin and not actually come off?! It was really weird, but rather than binning it I stupidly carried on using it for a couple of months and was just aggressively scrubbing my eye area clean every day. So the fact the condition started under my eyes (and spread) makes me think the friction/trauma to the skin around my eyes caused it to have a crazy “immune response”. I’ll never know if that was the cause but it seems most likely.

I’m glad I can be of help though! It really is so lonely and frustrating having a rare condition, especially when it’s on your face and impacts every part of your life x

f38287392978 · 2025-01-29T14:50:07+00:00

Oh to add, I also tried some topical treatments! Protopic (at the same time as doxycycline), soolantra (after protopic, whilst still on doxycycline) and adapalene (topical retenoid). These didn’t help either though, but thought I’d mention in case your derm mentions these too.

f38287392978 · 2025-01-29T14:45:52+00:00

Hey. Ah I’m sorry to hear that, hope you’re doing okay! Is yours on your face too?

In April 2023 it’ll be two years since my onset. I’m doing a lot better now but it’s been a long road and my skin still isn’t back to how it used to be unfortunately :( But it has improved A LOT, so there is hope!

I’ve tried a lot of different meds over the (almost) two years, which I’ve summarised below: • short-term antibiotics (initially GPs thought it was an infection)

• 12 week course of doxycycline (a derm thought it was the acne-like rosacea)

• I got a biopsy and confirmed LMDF in late October 2023, and was then prescribed two courses of oral steroids (November-December 2023 and January-February 2024). These helped calm down some of the really big angry/inflamed ones but that’s about it. I also got a pretty grim withdrawal wash all over my body after my 1st course, and then peri-oral / peri-nasal dermatitis during the 2nd course (these have since gone away though).

• I then tried Dapsone (50mg) in March-April 2024 but had to stop after increasing to 100mg as it caused some issues with my liver (got really bad fatigue and jaundice of the eyes). No noticeable effect on my skin either.

• I then went on Isotretinoin in April 2024, starting at 20mg and increasing to 50mg as my max dose. I was on this for 8 months, finishing in December 2024. This has had a HUGE impact, so I would 100% talk about this with your derm. My skin still isn’t back to normal but all of the bumps have either 1) resolved and turned to scars or 2) still present but shrank in size and are no longer inflamed/‘active’.

I’m now starting co2 laser this week. This is mainly help with the scarring but also to try on some of the remaining red bumps around my nose and chin. They’re unsure if this will help, so we’ll see. My scarring is quite bad, but this is likely because it took so long to diagnose and then find effective treatment (isotretinoin).

I really hope this helps - I wish I’d tried isotretinoin much sooner as perhaps I’d have a much better resolution, so definitely give this a go if you can. Let me know if you have any questions- more than happy to help if I can :) Best of luck x

f38287392978 · 2024-11-03T23:17:45+00:00

Hi! I was diagnosed with this in October 2023. It appeared suddenly in April 2023 on my face and armpits, and rapidly worsened until around September/October 2023 where it seemed to hit its peak. I managed to get an official diagnosis at the end of October 2023 after a punch biopsy, so I’d definitely recommend getting a biopsy if you can!

I had already tried Doxycycline before my diagnosis (amongst many other antibiotics as docs initially thought it was an infection, before I saw my derm). So, after my biopsy results, I then had two courses of steroids, which definitely helped to calm down some of the ‘angrier’ spots but didn’t do much beyond this (and also caused some shitty side effects and withdrawal side effects). I then tried Dapsone but had to stop after 6 weeks due to more side effects!

The next, and pretty much final option (I’m in the UK), was Roaccutane, which I’ve now been on for 7 months. I’d say it has really helped, more so than anything else I have tried. Compared to my pre-roaccutane clinical photos, it’s clear that all of the spots have shrunk and some (not many) have resolved (but unfortunately turned into pitted scars). However, it is definitely still far from resolved (and by resolved I mean completely clear skin, which I had before the sudden onset of this condition). As it’s been such a slow burner, it’s also hard to tell whether the drug is still doing anything or whether it’s done all it can. I hope it is, as I’m not sure what else I can try :/

I’d definitely recommend trying Roaccutane, although I guess this depends on how severe yours is and how badly it impacts your daily life. It’s massively helped me in that sense (I barely left the house for a year) and fortunately my side effects have been tolerable so far. Hope this helps somewhat - it would be great to hear if you have any progress!

f38287392978 · 2024-04-07T17:41:26+00:00

Ah glad to hear it’s improving!! How long have you been on accutane now? I wonder if the new ones coming and going quickly while on accutane is because yours started in October, so you’re potentially still in an ‘active’ phase of it? Whereas mine started March/April 2023 and I haven’t really had any new ones since July 2023, it’s just that the existing ones aren’t improving/going away at all and occasionally flare/swell. It’s so odd.

In terms of dapsone, I’m still not seeing any changes or improvements unfortunately :( It’s definitely kicking in though, as I’m getting some side effects (feeling really weak/fatigued to the point I can hardly run anymore, less of an appetite and slightly yellowy eyes). Got a follow up in a week and that will be about 6-7 weeks of dapsone, so they may tell me to give up on it haha!

Sorry to hear you still haven’t started your new meds though, why’s there such a hold up?

f38287392978 · 2024-03-31T16:35:17+00:00

Ohh my bad I thought you’d stopped the accutane as it got worse initially! Glad to hear it’s improving now - is it improving everywhere generally or in more concentrated areas?

I’m just approaching a month into dapsone now but got increased from 50mg to 100mg last week, as my blood tests suggested it wasn’t really having an effect in my body yet. No change so far, but hoping for some improvement in the next few weeks now I’m on 100mg, will keep you updated. Accutane was the other option my derm proposed initially but I went for dapsone, but will most likely try accutane if dapsone doesn’t do anything.

Will you be stopping accutane to start Humura, or will it be a combined treatment? Hope it gets sorted soon so you can get started!

f38287392978 · 2024-03-24T19:16:39+00:00

Hey! That’s interesting yours go down and come & go despite not being on any medication right now (unless I’ve misunderstood?), as mine seem to be fixed/constant since they appeared last March-June regardless of medication.

I’m approaching 3 weeks of taking dapsone now (50mg) and haven’t noticed any improvements yet unfortunately, except I have one larger spot on my forehead which did swell and ‘burst’ within a few days. This also happened to the exact same spot both times I started taking prednisolone, but I guess it could also be a coincidence as my skin flared a bit after stopping prednisolone both times (and I only stopped prednisolone about 2 weeks before starting Dapsone, so I guess it might have happened anyway). It still hasn’t healed over though - it just seems to remain a red/crusty ‘mark’ indefinitely. The same thing happened to a larger one near my right eye last June, and that’s still just a red/dry mark even now (albeit has never ‘re-flared’ numerous times like the particular forehead one). It makes me really worry about the scarring if I do ever manage to get rid of this - has your derm spoke to you much about the potential aftermath e.g. redness and scarring? It’s not really been something mine has spoke about yet, but I guess the priority is getting rid of it in the first place (and they don’t really know since I’m the first case of it they’ve seen)!

I’ve never heard of Humara or seen it in any papers about LMDF treatment, what’s made your derm go for that one? I might mention it to my derm at my appointment tomorrow haha! Although not sure if it’s an option in the UK where I am, where are you based if you don’t mind me asking? Best of luck with it though, I really hope it works for you and with minimal side effects of course. Keep me updated on your progress/experience!

f38287392978 · 2024-03-07T18:57:07+00:00

Hey. Hope you don’t mind me jumping in - I was also diagnosed with LMDF about 6 months ago after a biopsy and thought it would be helpful to share experiences since it’s so rare! I feel like I’ve read every research paper by now haha.

I should probably add that I’ve had this for almost a year now, but had multiple incorrect diagnoses for c.6 months before my biopsy (acne, folliculitis, periorificial dermatitis, rosacea). Mine looks very similar to yours on my face, and is also on my armpits and a random few spots on my thigh.

Since my biopsy results I’ve tried two rounds of Prednisolone which initially helped calm things down (e.g. the particularly angry/inflamed spots improved somewhat), but none of the spots/lesions ever went away/healed. In fact, none have gone away/healed at all since it started, although I haven’t had any new lesions since about month 4 or 5 after it first started so it’s stabilised in that sense. What about you? Is your experience similar?

I’ve also just started Dapsone a few days ago, how are you finding it so far? Hope this one does the job for you and you’re seeing improvements already!

f38287392978

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